End-of-Life Care of Persons With Dementia

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2002, Vol. 57A, No. 10, M640–M644

M640

REVIEW ARTICLE

End-of-Life Care of Persons With Dementia

Jean-Pierre Michel, Sophie Pautex, Dina Zekry, Gilbert Zulian, and Gabriel Gold

Geriatric Department, Geneva University Hospitals, Switzerland.

Many clinicians with different training and practice are involved in the care of persons with dementia. Whereas neurologists and psychiatrists focus their attention on the early phase of dementia, geriatricians and palliative care specialists are particularly involved at the end of demented patients’ lives. To summarize the progress of knowledge in this field, it seems possible to answer four fundamental questions.

When? Several longitudinal studies of cohorts of demented and nondemented patients showed clearly that de-mentia is a risk factor for early death. There are no survival differences between Alzheimer’s and Lewy body dis-ease patients. Patients with vascular dementia have the worst prognosis. These results need to be analyzed with consideration of associated comorbidity, types and intensity of care, and dementia treatment.

Why? Studies conducted on the basis of death certificates appear to be biased. A large autopsy study per-formed in the geriatric department of Geneva University Hospital showed no difference existed in immediate causes of death between demented and nondemented hospitalized old patients. On the other hand, cardiac causes are significantly more frequent in vascular dementia than in Alzheimer’s disease or mixed dementia patients.

How? Deaths of demented patients raise a lot of ethical considerations. It is always difficult to know demented patients’ awareness of the end of life. It is really difficult to accompany these patients, with whom communication is essentially nonverbal. During this delicate phase of the end of life, how can formal health professionals help the family members who are afraid of both death and dementia?

And after? Suffering of family members and caregivers has to be strongly considered. This goal includes the improvement of our communication skills with the patient, and the facilitation of interdisciplinary exchanges with the caregiver’s team and with the family members to allow acceptance of the death.

EMENTIA is certainly one of the most dramatic medical and economic challenges that our society will face in the coming years” (1). If the specificity of care appears incontestable at the early stages of the disease (959,000 new cases of dementia per year in the United States in 1994—ninth most frequent disease in incidence) (2), the care at the end of life of the 7,082,000 existing demented pa-tients (eighth most prevalent disease in the United States) (2) has to be better considered, provided, and studied. Geriatri-cians and palliative care specialists are particularly con-cerned because, for each decade after the sixth, the number of affected people doubles, so that an estimated 30% of the 85 population is affected by Alzheimer’s disease (AD) (3,4). The end-of-life care of demented patients needs to reach the best possible quality. Its intensity has to be appro-priate, timely, and ethically adapted, considering the multi-ple circumstances, the family concern, and the different en-vironmental conditions (living at home or in an institution).

To highlight the importance of the end-of-life care of de-mented patients, we will consider the survival of dede-mented ver-sus nondemented patients and the causes of death of patients with or without dementia, before examining specific ethical is-sues of the end of life involved in the care of cognitively dis-turbed patients. A discussion of the suffering of family mem-bers and caregivers will conclude this literature review.

SURVIVALOF DEMENTED PATIENTS

A 5-year follow-up of Canadians older than 65 years liv-ing in the community (2923 with and 7340 without

demen-tia) showed that elderly people with dementia have clearly increased mortality rates compared to elderly people with-out cognitive impairment in all age/gender categories (5). Three-year and 5-year mortality risk of demented patients living in the community reached 45% to 48% (6,7), and 70% (8), respectively. Median length of life from diagnosis was reported to be 5.3 years (9) and 5.4 years (10) in two pro-spective studies. But the median survival after onset of de-mentia (and not time of study entry) appears shorter, after adjustment for length bias, than previously stressed: 3.3 years (95% confidence interval [CI] 2.7–4) (11). A 3-year follow-up of 5362 community-dwelling Italian people be-tween the ages of 65 and 84 years confirmed that the rela-tive risk of dying (Cox proportional hazards model) for de-mented patients was higher (risk ratio [RR] 3.61 [CI 2.55–5.11]) than for a patient with cancer (RR 2.01 [CI 1.20–3.38]), heart failure (RR 1.87 [CI 1.27–2.76]), or di-abetes (RR 1.62 [CI 1.12–2.34]) (12). In the same study, institutionalization appeared to be more dangerous (RR 4.17 [CI 2.20–7.94]) than any pathological process consid-ered separately (including dementia—see above). That is to say, demented patients who are frequently institutionalized at the advanced stage of the disease are really at the highest risk of death (12). This relative risk is twice as high for men compared to women (8,12) and increases with age, severity of dementia, and its disability consequences (7,13). The mentia etiology is also important to consider. Vascular de-mentia (VAD) has a higher 5-year risk of mortality than AD (8), while Lewy body disease has the same 3-year mortality

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risk as AD, considering the age at onset and the age at death (14). But the number and the importance of associated dis-eases were not known in this study and could have ex-plained these findings, particularly the worst survival prog-nosis of patients with VAD.

Moreover, independent of the medical conditions, the types of social care seem to affect the survival of de-mented patients. Participation at a day center as well as the active support of family members appear to significantly decrease the mortality risk, whereas the benefit of Meals on Wheels on survival is not at all proved (6). This raises the question of whether individual emotional support of demented patients is more important than the type and quantity of care?

Another interesting debate relates to the impact of the new cholinesterase inhibitors on the survival of demented patients. The safety of this category of drugs was demon-strated on a total of 208 demented patients treated with tacrine (15). Treatment with tacrine, at least at doses more than 80 mg/d, appeared to be associated with a reduced like-lihood of nursing home placement (16). This tendency is supported by the results of a cost analysis based on a deci-sion-analytic model constructed on the milestones in the progression of AD (17). These various analyses suggested a trend for lower mortality for patients receiving more than 120 mg/d of tacrine (16,17). This tendency was confirmed by a recent retrospective cohort study of 1449 users of tacrine compared with 6119 nonusers matched on facility, date of tacrine use, level of cognitive function, and demen-tia diagnosis (18). The survival hazard rate ratio (HRR) was 0.76 (95% CI 0.70–0.83) for the users of tacrine, and those who used higher doses (80 mg/d) experienced the greatest survival advantage (HRR 0.74; 95% CI 0.56– 1.0) (18). These data on increased survival of AD patients treated with tacrine require us to reconsider the negative im-pact of institutionalization (see above [12]) and raise the same debate with the other cholinesterase inhibitor drugs (19). Moreover, the economic impact of such treatments needs to be reevaluated.

CAUSESOF DEATHOF DEMENTEDAND

NONDEMENTED PATIENTS

At the end stage of the disease, persons with dementia are often bedridden and are vulnerable to developing other medical conditions and dying earlier than if they were not demented (20). This is consistent with several studies re-porting that the main causes of death of demented patients are pneumonia and cardiovascular disease (21–24). Bron-chopneumonia occurred in severely impaired patients more often with AD (70.9%) than with VAD (25). Heart disease and stroke predominated in the less cognitively impaired patients with VAD (23). However, the above data were almost exclusively based on death certificate reports, which may not be sufficiently reliable. Morbidity and mor-tality statistics arising from death certificates are seriously flawed, because of the omission of important information (26). In practice, deciding which disorders should be in-cluded on death certificates reflects the opinion of the doc-tor completing the form, and very often underlying causes of death are not mentioned (26). This can explain why

com-parison of data from death certificates completed by either attending physicians or by doctor-coroners and necropsy re-ports shows large deviations in causes of death ranging from 91.6% to 74.8% (27). The Canadian Study of Health and Ageing proves that the sensitivity of the death certificate and the question regarding diagnosis of dementia was low (33% and 44%), although their specificity was very high (93%) (28). Similar discrepancies have also been re-ported by others, resulting in increased interest in geriatric autopsy studies (29,30). Pathological series are scarce in the literature. An autopsy series based on 72 cases showed that pneumonia was the immediate cause of death in 72% of clinically demented patients, while cardiovascular diseases represented only 24% of the causes of death (31). Another complete autopsy study performed on 120 hospitalized de-mented VAD (n 34), mixed dementia (MD; n 65), and AD (n 21) neuropathologically confirmed and 222 non-demented elders (mean age 84.9 6.9 years) showed that the number of reported causes of death per patient was 1.7 in both groups (32). Among the reported causes of death in each patient group, bronchopneumonia was identified as the main immediate cause of death in 40.8% of demented and 34.2% of nondemented patients. Infections of various origins, including pulmonary tract infections, represented 53.3% and 48.6% of the causes of death in demented and nondemented patients, respectively. The combination of cardio- and cerebrovascular diseases (cardiac failure pul-monary embolism myocardial infarction central ner-vous system hemorrhage) corresponded to 68.2% and 73.7% of the identified immediate causes of death in de-mented and nondede-mented patients, respectively. No differ-ence in infectious causes was observed between the various dementia types, although the combined cardio- and cere-brovascular causes of death were significantly more fre-quent in VAD (91.0%) than in MD (61.3%) and AD (52.1%) cases (p .001). The major differences were in the rate of cardiac failure in these various pathological cases: VAD (44.1%), AD (19%), and MD (15.3%) (32).

In opposition with current opinion (33), this study (32) strongly suggested, as have many others (29,34–36), that dementia can only be considered as an underlying cause of death. Moreover, demented patients died from the same causes as nondemented hospitalized subjects, when quality of care was not influenced by the cognitive status.

ETHICAL CONSIDERATIONSOF END-OF-LIFE ISSUESOF

DEMENTED PATIENTS

Dementia is associated with a wide variety of underlying conditions: poor nutrition resulting from diminishing intake of fluids and liquids, urinary incontinence, skin breakdown, and various types of infections that accelerate the progres-sion of the common age-associated diseases (diabetes, chronic heart failure, hip fracture) and precipitate the de-mented patient into functional dependency (37). Although the end-of-life issues are similar in demented and nonde-mented patients (see above), the intensity and types of care are really different in these two patient groups. A 13-month retrospective study compared the hospital charts of two kinds of end-of-life patients: demented (n 80) and meta-static cancer patients (n 84) (38). Complex invasive or

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noninvasive diagnostic tests were significantly more fre-quently used in cancer than in demented patients (respec-tively, 41% vs 13%—p .002 and 49% vs 23%—p .02), while enteral tube feeding and antibiotics for an identifiable infection were significantly less often prescribed in cancer than in demented patients (respectively, 9% vs 26%—p .02 and 45% vs 65%—p .004) (38). Cardiopulmonary re-suscitation was practiced with the same frequency in the two different groups of patients (38). These disturbing find-ings raise the difficult issues of appropriate quality of care at the terminal stage for demented patients.

Some of the most troublesome complications of advanced dementia, and particularly during the terminal phase of de-mentia, are the behavioral symptoms: physical aggression and delusions, wandering, agitation, sleep problems, and anxiety are among the most important (39). “Behavioral and psychological symptoms of dementia” (BPSD) is a recently coined term to describe this heterogeneous range of noncog-nitive symptoms occurring in people with dementia of any etiology (40). They result in emotional suffering for patients and caregivers, excess disability and mortality, premature in-stitutionalization, and increased financial cost (40). Antipsy-chotic neuroleptics are the most commonly used medications for the treatment of psychotic symptoms in AD. Although a vast arsenal of antipsychotics and antidepressants is available to treat behavioral symptoms of AD, none of these drugs has been approved specifically for this purpose. Nonetheless, physicians prescribe such medications without proper labelling and despite a dearth of published controlled studies supporting this use. A meta-analysis of the available placebo-controlled trials by Schneider and colleagues in 1990 (41) found that the use of these drugs produced only a modest effect and that no single antipsychotic medication had greater efficacy than another. However, more recent data have shown a significant effect of atypical antipsychot-ics in reducing behavioral disturbances (42,43). Side effect profiles and comorbidities must also be considered when prescribing these drugs. Several studies have shown that cholinesterase inhibitors also reduce behavioral and psycho-logical symptoms including agitation, apathy, anxiety, pac-ing, and visual hallucinations (9,10). Nonpharmacological intervention is also an important part of dementia care. Few controlled trials have been published on the effectiveness of various nonpharmacological strategies (44–46).

Frequently, BPSD is the atypical clinical presentation of pain and suffering (47). Assessment of discomfort in 104 late-stage demented patients (mean age 85 years) with the Assessment of Discomfort in Dementia scales showed that the most frequently displayed behaviors were tense body lan-guage, sad facial expression, persevering verbalizations, and verbal outbursts (47). These nonverbal cues and subjective states are very difficult to identify. A French study stressed this point by comparing the estimation of pain recognition and adequate treatment in hospitalized late-stage demented patients: Physicians thought they recognized pain in 96% of the cases, assistant nurses estimated that it was true only in 68%, and nurses were even more severe, thinking that pain was not recognized and not adequately treated in 44% of the cases (48). Moreover, the same study shows that physicians estimated that the care decision was really the

re-sult of an interdisciplinary consensus in 87% of the cases, while, respectively, assistant nurses and nurses thought that this was the case in only 55% and 51% of the cases (48). These differences attest to the inability of the caregivers to identify pain and suffering in advanced dementia patients. The main consequence is the tendency to undermedicate pain in these patients (49,50). This has led to the stressing of pain as the fifth vital sign with the hope that this will in-crease awareness of inadequately treated pain in older per-sons (51). Unfortunately, instead of providing pain control and spiritual support during the dying process, there is a ten-dency in the medical system to concentrate on life-prolong-ing interventions (52). Four main medical interventions are considered as life-prolonging interventions and are indeed raising ethical debates: cardiopulmonary resuscitation, renal dialysis, tube feeding, and antibiotic prescription. At the ad-vanced stage of dementia, only enteral nutrition and antibi-otic use raise an ethical debate.

A review of evidence of the usefulness of tube feeding in patients with advanced dementia including all Medline peer-reviewed papers published between 1996 and 1999 found that tube feeding does not clinically improve important out-comes such as survival, functioning, risk of pressure sores, risk of infection, or risk of aspiration (53). However, it must be recognized that malnutrition and vitamin deficiencies may worsen dementia in some persons (54).

Infectious complications are very common causes of death in demented patients (32). The atypical clinical pre-sentations of infection are frequent, and when the infection is recognized, antibiotic use needs to be discussed and inte-grated into the comprehensive assessment of the patient (physiological reserves, severity of dementia). Sometimes, the patient’s discomfort is linked to an evident clinical in-fection, particularly a pulmonary tract infection. In this case, the antibiotic prescription is useful, whatever the de-mentia stage, but the antibiotic choice has to be accurate, adequate, and timely (55,56).

The anguish of end of life seen in all patients exists also in severely demented patients. The quality of terminal care of these patients is greatly dependent on the patient’s aware-ness, which is very often fluctuating. Sometimes, the patient is confused and unaware of his or her condition; at other times, the patient knows that he or she is dying and attempts to communicate (57). What is the significance of this at-tempt? Is there any nonverbal hidden message? Is there any expression of a wish to die? Too often, these questions re-main without valuable responses. This raises important and difficult ethical debates within the caregiver staff and with the family members who are always completely disap-pointed by the fluctuating mental status. The ethical con-cerns about palliative drug treatment of these demented patients can be reduced but never completely solved. Ad-vanced health directive planning is probably the best mech-anism for respecting the demented patient’s prior self-deter-mination (58). The role of euthanasia as practiced in Holland and Oregon is beyond the scope of this review. SUFFERINGOF FAMILY MEMBERSAND CAREGIVERS

Confronted with the terminal stage of life of a demented patient, family members and health care professionals face

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two important fears: the fear of death and the fear of demen-tia (59). The mourning process itself is influenced by vari-ous factors, such as the symbolic role of the dying person, the unfulfilled requests, the death circumstances, and the quality of the last moments of life (60). In the case of death of a demented patient, the mourning process is different. The loss, the separation from a loved one who has been de-mented for several years, is even more difficult. The antici-pation of the death, which was preceded by a social death, does not help the mourning process (60).

Thus, in the terminal phase of life of demented patients, it is important to try improving communication skills with the patient to facilitate interdisciplinary exchanges, to help fam-ily members, to clarify the inescapable fatal outcome of their loved one, and to better cope with their suffering. After the death, it is fundamental to support the family during the mourning process, which, in these cases, is always difficult. Often, mourning can lead to severe depression in family members (60).

Acknowledgments

We thank B. Grab for his assistance with the preparation of the manuscript. Address correspondence to Jean-Pierre Michel, Geriatric Department, Geneva University Hospitals, CH-1226 Thonex, Geneve, Switzerland. E-mail: jean-pierre.michel@Hcuge.ch

References

1. Souêtre EJ, Quing W, Vigoureux I, et al. Economic analysis of Alzhei-mer’s disease in outpatients: impact of symptom severity. In: Giacobini E, Becker R, eds. Alzheimer’s Disease: Therapeutic Strategies. Bos-ton, Mass: Birkhauser; 1994:470–478.

2. Murray CJ, Lorez AD. The Global Burden of Disease. Cambridge, Mass: Harvard University Press; 1997.

3. Katchaturian ZS, Radebaugh TS. AD: Where are we now? Where are we going? Alzheimer Dis Assoc Disord. 1998;12(suppl 3):S24–S28. 4. Ritchie K, Kildea D. Is senile dementia “age related” or “aging

re-lated”? Evidence from a meta-analysis of dementia prevalence in the oldest old. Lancet. 1995;346:931–934.

5. Ostbye T, Hill G, Steenhuis R. Mortality in elderly Canadians with and without dementia: a 5-year follow-up. Neurology. 1999;53:521–526. 6. Orrell M, Butler R, Bebbington P. Social factors and the outcome of

dementia. Int J Geriatr Psychiatry. 2000;15:515–520.

7. Schaufele M, Bickel H, Weyerer S. Predictors of mortality among de-mented elderly in primary care. Int J Geriatr Psychiatry. 1999;14: 946–956.

8. Aguero-Torres H, Fratiglioni L, Guo Z, et al. Mortality from dementia in advanced age: a 5-year follow-up study of incident dementia cases.

J Clin Epidemiol. 1999;52:737–743.

9. Welch HG, Walsh JS, Larson EB. The cost of institutional care in Alz-heimer’s disease: nursing home and hospital use in a prospective cohort. J Am Geriatr Soc. 1992;40:221–224.

10. Severson MA, Smith GL, Tangalos EG, et al. Patterns and predictors of institutionalization in community-based dementia patients. J Am Geriatr Soc. 1994;42:181–185.

11. Wolfson CH, Wolfson DB, Asgharian M, et al. A reevaluation of the duration of survival after the onset of dementia. N Engl J Med. 2001; 344:1111–1116.

12. Baldereschi M, Di Carlo A, Maggi S, et al. Dementia as a major pre-dictor of death among Italian elderly. ILSA Working Group. Italian Longitudinal Study on Aging. Neurology. 1999;52:709–713 and com-ments 2000;54:1014.

13. Broersma F, Van Den Brink W, Deeg DJH, et al. Survival in a popula-tion-based cohort of dementia patients: predictors and causes of mortality. Int J Geriatr Psychiatry. 1999;14:748–753.

14. Walker Z, Allen RL, Shergill S, et al. Three years survival in patients with a clinical diagnosis of dementia with Lewy bodies. Int J Geriatr Psychiatry. 2000;15:267–273.

15. Gracon SI, Knapp MJ, Berghoff WG, et al. Safety of tacrine: clinical trials, treatment IND and postmarketing experience. Alzheimer Dis As-soc Disord. 1998;12:93–101.

16. Knopman D, Schneider L, Davis K, et al. Long-term tacrine (Cognex) treatment: effects on nursing home placement and mortality. Neurol-ogy. 1996;47:166–177.

17. Henke CJ, Burchmore MJ. The economic impact of tacrine in the treatment of Azheimer’s disease. Clin Ther. 1997;19:1–6.

18. Ott BR, Lapane KL. Tacrine therapy is associated with reduced mor-tality in nursing home residents with dementia. J Am Geriatr Soc. 2002;50:35–40.

19. Lopez OL, Becker JT, Wisniewski S, et al. Cholinesterase inhibitor treatment alters the natural history of Alzheimer’s disease. J Neurol Neurosurg Psychiatry. 2002;72:310–314.

20. National Institute on Aging. Progress Report on Alzheimer’s Disease 1998. Bethesda, MD: National Institutes of Health; 1998.

21. Hewer W, Rossler W, Fatkenheuer B, et al. Mortality of patients with organ-induced psychiatric disorders during inpatient psychiatric treat-ment. Nervenarzt. 1991;62:170–176.

22. Inagaki T, Yamamoto T, Nokura K, et al. Five year follow-up study on dementia in institutions for the elderly. NipponRonen Igakkai Zasshi. 1992;29(10):729–734.

23. Kukull WA. Causes of death associated with Alzheimer’s disease: variation by level of cognitive impairment before death. J Am Geriatr Soc. 1994;42:723–726.

24. Olichney JM, Hofstetter CR, Galasko D, et al. Death certificate report-ing of dementia and mortality in an Alzheimer’s disease research center cohort. J Am Geriatr Soc. 1995;43:890–893.

25. Thomas BM, Starr JM, Whalley LJ. Death certification in treated cases of presenile Alzheimer’s disease and vascular dementia in Scot-land. Age Ageing. 1997;26:401–406.

26. Salib E. Autopsy in psychiatric geriatry. Int J Geriatr Psychiatry. 1998;13:747–748.

27. Karolyi G, Karolyi P. Value of mortality data and necropsy records in monitoring morbidity in a population. J Epidemiol Community Health. 1991;45:238–243.

28. Stewart M, McDowell I, Hill G, et al. Estimating antemortem cogni-tive status of deceased subjects in a longitudinal study of dementia. Int Psychogeriatr. 2000;13(suppl 1):99–106.

29. Klima MP, Povysil C, Teasdale TA. Causes of death in geriatric patients: a cross-cultural study. J Gerontol Med Sci. 1997;52A:M247–M253. 30. Blumenthal HT. The autopsy in gerontological research: a

retrospec-tive. J Gerontol Med Sci. 2002;57A:M433–M437.

31. Burns A, Jacoby R, Luthert P, et al. Cause of death in Alzheimer’s dis-ease. Age Ageing. 1990;19:341–344.

32. Kammoun S, Gold G, Herrmann F, et al. Immediate causes of death of demented and non-demented elderly: clinical and pathological com-parisons. Acta Neurol ScandSuppl. 2000;176:96–99.

33. Hoyert DL, Rosenberg HM. Mortality from Alzheimer’s disease: an update. Nat Vital Stat Rep. 1999;47:1–5.

34. Molsa PK, Marttila RJ, Rinne UK. Survival and cause of death in Alz-heimer’s disease and multi-infarct dementia. Acta Neurol Scand. 1986; 74:103–107.

35. Chandra V, Bharucha NE, Schoenberg BS. Patterns of mortality from types of dementia in the United States, 1971 and 1973–1978. Neurol-ogy. 1986;36:204–208.

36. Hwang JP, Tsai SJ, Yang CH. Mortality in geriatric psychiatric inpa-tients. Int J Psychiatry Med. 1998;28:327–331.

37. Shuster JL. Palliative care for advanced dementia. Clin Geriatr Med. 2000;16:373–386.

38. Abronheim JC, Morrison RS, Baskin SA, et al. Treatment of the dying in the acute care hospital: advanced dementia and metastatic cancer.

Arch Intern Med. 1996;156:2094–2100.

39. Michel JP, Gold G. Behavioural symptoms in Alzheimer’s disease: va-lidity of targets and present treatments. Age Ageing. 2001;30:105–106. 40. Finkel SI, Burns A. Behavioural and psychological symptoms of dementia (BPSD): a clinical and research update. Int Psychogeriatr. 2000;12:9–12. 41. Schneider L, Pollock VE, Lyness SA. A meta analysis of controlled

trials of neuroleptic treatment in dementia. J Am Geriatr Soc. 1990;38: 553–563.

42. Lane HY, Chang YC, Su MH, et al. Shifting from haloperiodol to ris-peridone for behavioral disturbances in dementia: safety, response predictors, and mood effects. J Clin Psychopharmacol. 2002;22:4–10.

(5)

M644 MICHEL ET AL.

43. Davidson M, Harvey PD, Vervarcke J, et al. A long-term, multicenter, open-label study of risperidone in elderly patients with psychosis. Int J Geriatr Psychiatry. 2000;15:506–514.

44. Teri L, Logsdon RG, Uomoto J, McCurry SM. Behavioural treatment of depression in dementia patients: a controlled clinical trial. J Geron-tol Psychol Sci. 1997;52B:P159–P166.

45. Procter R, Burns A, Stratton-Powell H, et al. Behavioural management in nursing and residential homes: a randomised controlled trial. Lan-cet. 1999;354:26–29.

46. Gormley N, Lyons D, Howard R. Behavioural management of aggres-sion in dementia: a randomised controlled trial. Age Ageing. 2001; 30(2):141–145.

47. Kovach CR, Weissman DE, Griffie J, et al. Assessment and treatment of discomfort for people with late-stage dementia. J Pain Symptom Manage. 1999;18:412–419.

48. Gonthier R, Vassal P, Diana MC, et al. Séméiologie et évaluation de la douleur chez le dément ou non-communicant. Info Kara. 1998;53: 12–23.

49. Farrell MJ, Katz B, Helme RD. The impact of dementia on the pain experience. Pain. 1996;67:7–15.

50. Weissman DE, Matson S. Pain assessment and management in the long-term care setting. Theoretical Med Bioethics. 1999;20:31–43. 51. Flaherty JH. Who’s taking your 5th vital sign? J Gerontol Med Sci.

2001;56A:M397–M399.

52. Volicer L, Hurley AC, Blasi ZV. Scales for evaluation of end of life care in dementia. Alzheimer Dis Assoc Disord. 2001;15:194–200.

53. Finucane TE, Christmas C, Travis K. Tube feeding in patients with ad-vanced dementia: a review of the evidence. JAMA. 1999;282:1365– 1370. Comments: JAMA. 1999;282:1380–1381; JAMA. 2000;283:

1563–1564.

54. Reynish W, Andrieu S, Nourhashemi F, Vellas B. Nutritional factors and Alzheimer’s disease. J Gerontol Med Sci. 2001;56A:M675– M680.

55. Michel JP, Loew F, Brennenstuhl P, et al. Ethique de l’antibiothérapie en médecine de l’âge avancé. Schweiz Med Wosch. 1994;124:2220– 2225.

56. Van Nes MC, Huber PH, Zekry D, et al. Considérations sur l’utilisa-tion des antibiotiques chez les malades très âgés. Gériatr Pratique. 1998;4:39–42.

57. Benbow SM. Dementia, grief and dying. Palliat Med. 1990;4:87–92. 58. Hurley AC, Bottino R, Volicer L. Nursing role in advance proxy

plan-ning for Alzheimer patients. Caring. 1994;13:72–76.

59. Franken E, Thomas J, Verset C. La mort du vieillard dément.

Thana-tologie. 1997;31:143–146.

60. Dell’Accio E. Le vécu de deuil des familles ayant accompagné un par-ent âgé démpar-ent. Jalmalv. 2000;60:35–39.

Received April 15, 2002 Accepted May 1, 2002